Caregivers of Alzheimer’s patients need support, too
By Judy O’Gorman Alvarez
During November, National Alzheimer’s Disease Awareness month, the focus isn’t only on the debilitating disease. It is also on the 15.5 million caregivers who, according the Alzheimer’s Association, provided an estimated 17.7 billion hours of unpaid care valued at more than $220 billion last year.
Which is why November is also designated Family Caregiver month.
Alzheimer’s disease – the most common cause of dementia – is a progressive disease that destroys memory and other important mental functions, resulting in the loss of intellectual and social skills. But is doesn’t just affect the patient.
“When you have any chronic debilitating disease – Alzheimer’s, Parkinson with dementia, Lewie body dementia, multiple strokes – you have people who physically have certain problems,” said Stephen J. Swartz, M.D., board certified geriatric specialist, medical director at Care One at King James subacute care facility, and a director of hospice at Meridian at Riverview Medical Center, Red Bank.
“As with any chronic progressive disease, the patient will increasingly need more care. There will be progressive cognitive problems and physical needs including bathing and feeding,” he said.
According to Swartz, the options are to move the patient to a nursing home that will be in charge of the custodial care. “Or if you’re rich enough, have someone else do the custodial care and then you can spend quality time with them and your family.”
In the final option the onus for caregiving falls solely on the family.
“What does that do to the caregiver’s life?” he asked.
“The caregiver becomes everything,” he says.
And becoming the sole caregiver can leave a person physically, emotionally and even financially drained. “It can take all their money, all their energy,” he said. “And you’re left with very little emotional support from the patient because of their dementia.”
Whether it’s taking care of an aging parent or a beloved spouse who has become unrecognizable, the all-encompassing nature of the job may cause a caregiver to neglect their own families. The strain can become emotionally, financially and socially damaging, Swartz said, resulting in caregiver burnout.
“If it gets very bad…that caregiver can get depression, alcohol problems and financial and marital problems,” he said.
Some severe situations can result in elder abuse. As a patient’s condition worsens, situations get worse. “There may be screaming all the time, you may be up all night. They start neglecting them, may be too tired to change them.
“That’s why caregiver groups are so important,” Swartz said. “Support from churches, synagogues, counselors, social workers, the community for Alzheimer’s society and caregiver groups” can bring comfort and understanding. People need “a place where they can talk and it’s OK to feel depressed and feel sorrow.
“There is help available,” he said. “But they need support all along the way, not just at the latter stages of the disease.”
“The most important thing for caregivers is that unless someone is going through it, they really don’t understand,” said Robin DeNucci, geriatric social worker who runs a support group at the geriatric program at Monmouth Medical Center.
“They understand it,” she said. “They get the frustration and the loneliness because they’re living with someone they’ve loved for 40 years but now with someone who doesn’t communicate.”
Her group, which happens to be made up of women caring for their husbands with Alzheimer’s, has become very close. “They’ve really bonded with each other,” she said.
“There are a lot of tears” in the group…and laughs, too…It can get emotional.”
During group meetings “a strong theme is loneliness,” DeNucci said. “It’s a very lonely life.
“And besides loneliness, there’s a lot of guilt.”
Some feel a sense of guilt that a loved one is suffering from the disease, or for impatient or frustrated feelings they may experience. And when the care demands become so overwhelming a family finally reaches the decision to move the loved one to a facility, the guilt can be crushing. Sharing those thoughts with a support group can be beneficial.
Eleanor Dolan of Little Silver didn’t think she needed a support group when her husband Roger was diagnosed with Alzheimer’s disease a few years ago.
“At first you don’t want to believe this is happening to you,” she said. “People keep this like a deep dark secret.
“It’s a devastating thing for the family and for the people themselves because they know something is happening but don’t quite know how to handle it,” she said.
The Monmouth Medical Center support group has been a source of comfort, knowledge and friendship for Dolan. “We do a lot of sharing with one another,” she said. “Everyone knows what the other is going through.”
Some caregivers have been wrestling with their loved one’s disease for a while and others are just processing the diagnosis. In Dolan’s group, the caregivers deal with all stages of Alzheimer’s disease. “There’s a lot of adjustment (during the illness) for the spouse and for the whole family,” Dolan said, “and how to handle things.”
The group allows caregivers to share fears and complaints, including how outsiders – friends and even strangers – treat Alzheimer’s patients. Dolan said some people may ask insensitive and personal questions.
“It’s a very sensitive disease,” she said.
Keeping busy and finding time for oneself is crucial. Dolan looks forward to a weekly lunch date with friends while her husband attends an adult day care. Family members will keep him company while Dolan attends the monthly support meeting. “I find myself fortunate because I have a great support group.” She credits her three daughters and sons-in-law for their plentiful support and love.
For more information or to find a support group, visit the Alzheimer’s Association at http://www.alz.org/.
